Really suffering and just don't know what to do 😟

[Croydebay]

Hi

I was hoping someone would be able to give me some advice as I really don't know what to do! I was diagnosed with endo in 2012 after having a diagnostic lap and diathermy. Was put on cerazette and have been on this for nearly 3 years now but feel things are stopping to work for me. Is this normal with the pill after being on it for a while? I'm starting to bleed a lot which is didn't previously whilst being on it and it does feel like my body is having periods and trying to ovulate again as this pill is suppose to stop ovulation which is very painful for me. I'm having real bad endo flare up which I feel are lasting a good 3 weeks, weeing a lot, lots of tummy pain,back pain, severe fatigued,body aches,breast pain. I'm trying to not go to the doctors as I go abroad for 2 weeks in August and was hoping to wait until I'm back! I feel this pill is not working for me anymore but I know all they will offer me is the coil and I really don't think it's for me and don't want it. It's the weeing all the times that is getting me down the most I feel I will be incontinent through this when I'm older it's awful! I really don't want anymore surgery but I can't carry on like this anymore 😒Please help any advise greatly appreciated X

[ladybird7]

Really feel for you. I guess its your decision but I would go to doctor now - you don't have to change treatment options until after your holiday but they might have something that will help now. I would. Hugs xx

[Croydebay in reply to ladybird7]

Thank you for taking the time to reply to my post it's much appreciated. I took your advise and made an app can't get one with my doctor until 10th August 😬 But managed a phone app tomorrow so will see what she says. I just feel so emotionally and physically drained with the horrible disease and to think I have to cope with it for at least we anotjer 10 years the thought scares me 😞

[KSvedenmacher]

I hear you, for me any given pill usually lasts about 3 years before I have to change. I have done this for the last 27 years (with a break for surgery and 2 pregnancies) and now I have finally given up and am going to have surgery again in about 6 weeks. If you don't want to have more surgery, you can see if another pill agrees better with you. Cerazette never agreed with me, I came off it after 3 months, but maybe there is something else better for you? Have you tried the combination pill?

[Croydebay in reply to KSvedenmacher]

Thank you taking the time to reply much appreciated 😀 This is what I was thinking that maybe it's stopping working properly as I've been on it nearly 3 years! I just don't know if there much options for me as I can't take the combined pill due to high blood pressure and I really don't fancy the coil at all it's just not for me! I don't want more surgery unless I really have to! Feel for you having to have your 3rd surgery it's just not right is it having to keep going though this process! Do you mind me asking how old you are as I was kind of hoping the older I get (I'm 35) the easier things may be get but not sure if that's true!!! I just feel so mentally and physically drained from this horrible disease and like you I have two young children too. I just feel it over takes my life and am trying my hardest not to let it X X X have you tried micronor? X

[KSvedenmacher in reply to Croydebay]

I am 39 and I didn't find it got better over time, rather worse. Sorry to be a downer. This will only be my second surgery though so I can't complain too much. I do hope this surgery will take care of it forever. I am having a full hysterectomy with removal of my ovaries and all the endometriosis. I suffer from horrendous periods (massive clots and heavy bleeding) which is why I opted for the hysterectomy.

I haven't tried micronor, no. I am done with the pill though, six more weeks till my surgery and then I don't have to worry about the pill any longer.

[Croydebay]

This is what I seem to be reading a lot that it doesn't get any better with age sadly! I think that will be a similar route for me to what your having done I've only had one lap too and know the next op I have with be to having everything out but am just trying to persevere for a little longer if I can. This is why I went on the pill after my lap as I was passing big clots and very heavy bleeding. I couldn't bare to have that again but I feel my symptoms are worsening each month and I keep bleeding lots too which is getting heavier each time. I've not had any periods for a good couple of years on this pill so that's why im thinking it's not working anymore. Did you ever try the coil? This is all my doctor seems to keep throwing at me but I really don't feel it's for me at all and feel a little bullied into having it! X

[KSvedenmacher in reply to Croydebay]

I have been offered the coil, but like you I never felt it was for me. It just felt wrong, I couldn't imagine having something permanently lodged in my uetrus. I have also heard horror stories about the coil and instinctively feel that that would be me.

[Croydebay in reply to KSvedenmacher]

That's exactly how i feel 😀 Glad im not the only one who thinks that! I feel my doctor doesn't respect when I say it's not for me! I just know I wouldn't like it X

[Tboag]

You need to get your gp to refer you to a bsge specialist centre, and they will operate and excise any endo, this is better that diathermy as they cut it from root, good luck xxx

[Croydebay in reply to Tboag]

Thank you for your reply! I think deep down I know that's the route I need to go down but am just putting it of as really don't want more surgery at the moment 😬 We don't always have a choice do we sadly! Funny as I've just been looking online to see which one is closest to me! Have you had this done? If so have you found it to be good long term? X

[Tboag in reply to Croydebay]

I know what you mean, but like you said, not much option, I had a laparoscopy last march endo removed and adenomyosis diagnosed then had a hysterectomy in July last year for adenomyosis both under a general gyne, I'm still in daily pain. I'm now thankfully with a bsge specialist and am awaiting a laparoscopy with him, so fingers crossed for me, it will help, xxx

[Peenie123 in reply to Tboag]

Hi, which BGSE centre did you go to please?

[Croydebay]

To think that you have to go all through that then still be in pain is awful I really feel do you! This is why I'm putting it of as seem to read this a lot! I really hope things get better for you after your next laparoscopy. I just don't know what to do anymore I really don't 😬